column logo Alithea Athans

Understanding all the ins and outs of cold agglutinin disease (CAD) can be overwhelming. When it comes to technical and medical terms, it can be all too confusing, but when it comes to how you feel, well—you become an expert. And no one can tell you that you’re wrong.

That’s the thing about how you feel inside; only YOU feel it. Sometimes you can’t explain it, but nonetheless, those feelings exists. CAD has made me acutely aware of what is normal and what’s not for me. I pay attention because when I don’t, I typically have an episode, which can range from short-term cold-induced symptoms to complete exhaustion.

Now that I’m over 50, the strangest things have happened to me; from what I gather, I am not alone. My friends and I joke that after 50, just existing hurts. I literally will go to bed fine and wake up in the morning as if I participated in fight club. It can get confusing when you have CAD. Sometimes, I’m unsure if my issues are age-related or if it is my disease. Did I get cold and didn’t realize it? Am I hemolyzing? This can be most frustrating when you feel like you can’t rely on what you are feeling. Your body is telling you something, but you doubt what you normally know about yourself.

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What can you do? Surely you aren’t going to sit there and suffer. Instead, you need to access what’s going on. I try to figure out the reasons for why I might be feeling a certain way. Did I eat or drink something cold? Was I sweating and getting cold while I was sleeping? Am I eating enough and staying hydrated? Or maybe I overdid it the day before and I am paying for it now. All these things have contributed to me waking up feeling unwell at some point or another.

Read more about experimental therapies for CAD

This week, I found an interesting discussion about different ways to take care of ourselves with amazing results. A gentleman who has CAD had gone to have a shiatsu session. He said he had such energy afterward that he couldn’t believe it, and it lasted for days. He decided to schedule his next lab appointment immediately after his next shiatsu session and he was amazed by his blood results. He went from having his hemoglobin in the 11 to 12 range to it being 13, which is “normal.” That is something else! He went on to say that he didn’t believe it was from the placebo effect and planned to wait and see.

It turns out that a deep tissue massage such as the one he had with shiatsu increases blood flow. It also can decrease inflammation. The one thing those of us with CAD need more of is an increase in blood flow. That would probably explain the surge in energy he had that lasted “days,” as he put it. I found online that other than infection, inflammation can be a trigger for and can drive hemolysis. It looks like there are many benefits to getting a massage. It appears to cover our main problem, the decrease in blood flow that we need to increase for enough oxygen to get to all areas of our body. Reducing inflammation will benefit your whole being. I did find there could be an issue, though. CAD increases your chances of thromboembolic events.

The gentleman with CAD had been getting shiatsu massage. A deep tissue massage is not recommended for people with an increased risk of blood clots because a blood clot can be dislodged and travel through the body where it can cause harm. This doesn’t mean that we will have a clot at one point or another, but it is better you know so you make careful decisions.

I do have an appointment with my hematologist coming up soon, and I am going to ask his opinion. I have in the past requested a D-dimer test to determine if I have blood clots, but his response was, “We can do it, but it will only tell you that you have them, not where they are in your body.” This makes sense, but wouldn’t it make more sense to know in case I need to take medicine for it?

I must be honest: I am looking to do whatever it takes to feel the best I can on a daily basis. I may just try a massage and I will be having that blood clot discussion again to make sure it’s a good decision.